A Co Down mum campaigning for a ‘transformative’ cystic fibrosis drug to be made available to her two-year-old son is urging the public to back a ‘lie down’ protest this Thursday.
A UK-wide campaign for a drug known as Orkambi to be made available on the NHS has been ongoing for some time, but the US pharmaceutical company Vertex has yet to reach an agreement with health bosses on price.
A protest organised by Co Down mum Jen Banks, whose two-year-old son Lorcan was diagnosed with cystic fibrosis when he was just 12-days-old, is set to take place on Thursday outside the Almac premises in Craigavon, where Orkambi is manufactured.
She said the ‘lie down for cystic fibrosis’ event is being held outside the Almac premises to highlight the fact that while the drug is made in Northern Ireland and exported elsewhere, patients here don’t have access.
“It’s going to happen outside Almac in Craigavon to highlight the fact that even though Orkambi is being made right here in Northern Ireland, we can’t get it in Northern Ireland,” she explained. “It’s absolutely horrible.”
She stressed, however, that while Orkambi is being made by Almac in Portadown, the local firm has no say in whether it will be made available.
“We’re not protesting against Almac, I just want to make that clear,” she said.
“Orkambi is owned by a company called Vertex. It’s down to Vertex and the NHS not being able to agree a price. It’s just to highlight the situation we’re in where a drug being made in Northern Ireland is being exported all over and we can’t get it here.”
The ‘lay down for cystic fibrosis’ event in Craigavon, set to take place at 1pm, is planned to coincide with a similar event at Parliament Square in London. There will be 10-minute silence to remember 255 people across the UK who would have been eligible for Orkambi since November 2015, but have since died.